Tuesday, February 9, 2016

Mother's Day 2015

Oh how I love Mother's Day!  It's always been such a joy and honor to celebrate the world's most amazing mom.  Mine!!!  And now, I get to share that day with her because my precious little princess, Seiden Grace, made me a mommy and I couldn't love a title more.  

On this day, we get to celebrate all the special and amazing women in our lives who have touched us, helped guide us, inspire us, give to us, sacrifice for us, are examples to us, and love us unconditionally.  I have been so blessed and fortunate to have such an amazing mom, who I could never thank enough for every single thing she's done for me, and continues to do for me, Cody, and Seiden on a daily basis.  She still gives up her time and energy to us whenever we need it and will drop whatever she's doing to come help us.  I have also been blessed by so many other mom's out there.  Each and everyone of you has helped shaped me into the woman I have become and the mom I am and hope to always be to my sweet baby girl.  To my mom...I love you more everyday and I am so glad you are my mom.  Thank you for teaching me all that I know.  I hope I can be as good a mom to Seiden as you are to me!  Happy Mother's Day friends!!!








Monday, February 8, 2016

May 7, 2015

This day, this was the day that we had been anticipating since we saw Dr. Thomas on April 9th.  It was the day that Dr. Mac had scheduled Seiden to have a sonogram and MRI on her neck and cheek.  We were excited to see what all God had done in Seiden's life as far as healing went.  But, we were also nervous for these tests to take place.  For the MRI, she was going to have to be under anesthesia, and that alone is nerve wracking.  On top of that, we were worried about what these tests were going to show us.  She hadn't had any type of sonogram or MRI since before she had her big surgery at four days old.  So, we were just really uncertain of what these tests were going to find.  All we could do was put our trust in God and lean on Him for answers and have faith that He was going to take care of Seiden just like he has from the time He breathed life into her.

Our morning started off SUPER early.  Every morning starts off early for me, but this one was different because we were getting on the road before 4:00am to go to Cook's.  Seiden's sonogram was scheduled for 7:30am and her MRI was scheduled for 10:00am.  Because she was going under anesthesia, she couldn't eat anything 6 hours before the MRI and she couldn't drink anything 3 hours before.  So, we woke her up at 3:30 that morning in hopes that we could get something in her tummy since we would be on the road and she couldn't eat anything after 4:00 that morning.  My sweet girl woke up so happy and was just talking away.  Thankfully, she ate an entire banana and a yogurt!  I guess she was hungry from sleeping so hard!  My parent's went with us.  So, when they got to our house, we got the car loaded up and started heading to Ft. Worth.  We weren't 10 minutes down the highway and Seiden had fallen asleep.  Which was so great because she had such a long day ahead of her.

We pulled into the Dodson Specialty Clinic right at 630.  We got all checked in, sat down in the waiting room, got Seiden some toys, her juice, and waited until we were called back for the first test.  We didn't have to wait long at all to go back to the sonogram room.  The technician we had was so sweet and Seiden did phenomenal during the sonogram.  She was playing with a toy and looking at the TV they have mounted on the ceiling.  There were cartoons on...so that took her mind off of what was going on!  The child never watches TV...so I was surprised she was so into it.  But hey, whatever works!  We got a surprise while we were in the sonogram room.  Dr. Mac wanted to come over from Cooks and do another sonogram on her so he could see for himself what he was looking at before the MRI later that morning.  This was our first time meeting him.  And, let me tell you, he is nothing but amazing.  He was so sweet and gentle with Seiden.  He called her his little "boo boo" and just loved on her while he was doing the sonogram on her neck and cheek.  We were sitting in there the entire time and got to see everything.  What we saw didn't surprise us at the same time that it did.  The inside of her sweet, little, right cheek looked like a sponge.  There were just hundreds and hundreds of these tiny cysts all in her cheek.  Some of them were knitted together,most of them were tiny, and there were three that were pretty big.  Those big ones ranged in size from a quarter to a dime.  And the rest of them were tee-niny-tiny.  Like...the size of the tip of a pencil or pen, tiny.  He talked to us about other cases he had worked on and felt confident that he was going to be able to do the interventional radiology treatments on her.  We just needed to do the MRI and get those results back so he could confirm and have an even better idea of what was going on inside her cheek and neck.

We were done with the sonogram by 8:30 and had a lot of time to kill before we needed to go over to the radiology department and get checked in there.  We walked over to Cooks (Dodson is connected to Cook's, so we can walk across on a sidewalk and be to either place) thinking we could go to Build A Bear for a bit while we waited.  But, they don't open until 10:00.  So, Cody and dad went and had some breakfast while mom and I walked Seiden around in her stroller around the perimeter of Cooks.  We didn't want to eat in front of her since she couldn't eat, so we went in shifts.  It started to sprinkle while we were outside.  So, we went back in and looked at the Lego replica of the building, went to the library, the music room, strolled back around the hospital, switched shifts, and then it was just about time to head back.  So, we all walked back over to Dodson for the MRI.  We had to wait awhile for them to take her back this time.  I was getting nervous because I was afraid she was going to start getting really hungry and/or thirsty and there was nothing anyone could do for her.  But, just like every other time, she totally surprised me and was just as happy and content.  The nicest thing about a children's hospital, is that it is solely geared towards children.  There is a TV in every waiting and pre-op room, toys in every room, a big play room at the back of each department, and the doctor's and nurses are just absolutely amazing with kids.  You can just see and feel the love they have for them.  Finally, it was time for her to go back.  The anesthesiologist came in and looked at her, took her vitals, and asked us a bunch of questions.  While he was examining her, he noticed her trachea was pushed a little over to the left.  He told us that it was due to the fact that the cyst had put so much pressure on it while she was developing, it moved it slightly.  But, it had never been a problem and should never turn into one.  Just more of an observation than anything.  After that, we got to go back with her while they put her under.  Another perk of a children's hospital...scented anesthetics.  We always pick cotton candy for her because...well...because cotton candy smells AMAZING!  This was the hardest part of the day.  The techs and doctors held her arms and legs while we rubbed on them and soothed her.  And, I laid my head next to hers and just talked to her and prayed over her while she feel asleep.  It didn't take more than 30 seconds.  And, when we were leaving, one of the nurses prayed over us and her, then wheeled her into the MRI room.  There is no better hands we could be leaving her in when she goes back with those doctors and nurses.  We truly know she is in God's hands and He has sent these men and women down to lay healing hands on her.

It was just about lunch time when we came out to the waiting room to get my parents.  They told us it would be about an hour from the exam time until she woke completely up.  So, we went ahead and walked over the food court in Cooks to grab a quick lunch.  After we all got what we wanted, we sat down to eat.  Just as we were finishing up with lunch, I got a text on my phone and our pager went off.  Seiden was out of her MRI and it was time for us to go back to the waiting room.

Seiden wasn't fully awake when we got back to her room.  While we waited for her to wake completely up,we went ahead and changed her back into her pj's.  We had to leave on all her monitors and she had to take a few sips of juice before we could leave.  So, we wanted her to be comfy and already in her pj's so we could snuggle her and allow her to be as comfy as possible while she finished waking up.  It didn't take her long to fully wake-up, but she was a little out of sorts for the first few minutes.  She was really confused and upset until she realized we were there with her and she was ok.  However, she did not like the monitors.  She started grabbing at her toes to try and pull them off.  The nurse told us it was ok because, clearly, her vitals were fine and she was ok.  She didn't want any juice at first, but we finally got her to drink a few sips.  Then, we were discharged and they walked us to our car.  Before we left for home, we made one more stop to Toys 'R Us.  We knew she would need to run around and play a little bit before we headed back home.  But, we didn't want to take her to a park because she was in her pj's and houseshoes.  So, we thought it would be better if we took her there so she could look at everything and get a little bit of active time before the long ride home.  Since she had been under anesthesia, we knew she would tire out faster than normal, so we just walked around and looked at books, stuffed animals, and dolls.  It wasn't long and we could tell she was getting tired.  So, we went to pay for a couple of things we found for her, loaded up in the car, and headed home.  Another safe trip, and hopefully some answers for the questions we had about what we were going to do for Seiden.

We didn't find out the results that day.  But, we did get a phone call from Dr. Mac that next week.  He confirmed what he had already told us he thought.  That she was, in fact, a candidate for the interventional radiology treatment that he wanted to do on her.  The treatment was called sclerotherapy and it was going to be an outpatient procedure.  We were so excited to hear that news!  Just knowing that she wouldn't have to be intubated, possibly sedated, and in the hospital for a few days, was music to our ears.  The only bad news, she would have to have more than one of these procedures.  We didn't know how many, but from how Dr. Mac talked, we thought probably close to five of them.  I hung up the phone with him relieved, anxious, nervous, excited, thankful, sad, angry, just a flood of emotions came over me.  I knew God was leading us through, just like He always had.  I knew Seiden was going to be fine and this was just another phase in her journey.  I knew that this was God's way of putting physicians in her life to do His works here on this earth and heal her.  Our appointment for the first sclerotherapy treatment was scheduled for June 22nd.

Thursday, February 4, 2016

NICU Reunion 2015!!!

"Today you are you!  That is truer than true!  There is no one alive who is you-er than you!"

~Dr. Seuss

 


 


















 
 



 

 








April 9, 2015

This post is clearly late.  To say we have been busy would be an understatement!  Blogging has by far, fallen by the wayside in importance compared to the other things that have been going on in the past year.  So...I'm going to try and catch you all up on Seiden and our adventures starting with this post!

Last April, we took Seiden back to see her surgeon.  This appointment was one we had been fearing, anticipating, and longing for answers because of a new growth that we noticed had come up on her left side, behind her ear.  I noticed it one morning when I was getting her ready for school and immediately called Cody into her room to come see if I was (hopefully) just seeing things.  Unfortunately, my mother's intuition and eyes were not deceiving me.  Cody confirmed my fears and agreed that there was something there behind her ear.  What we both had seen, was a green/blue knot, about half an inch long and raised up just a little bit, behind her right ear.  When I took her over to my parent's house that morning, I had them look at it too.  And, we all agreed, it was time to call the surgeon and get in as soon as possible.  We had no idea what it was, what it could be causing, if there were more that were going to pop up, etc.  As soon as the clock turned 8:00 on the morning we found the spot, I was on the phone with her surgeon's office, begging to get in just as soon as he had an opening.  Even if that meant going to one of his other offices in the Metroplex, we just wanted in and fast!

Thankfully, our little princess was not acting a bit different.  She didn't even notice it.  Except, of course, when we were messing with her trying to get a better look at it.  And even then, the growth didn't bother her, we were the ones aggravating her!  She is such a trooper.  I can't say it enough.  This little girl continues to amaze me.  She has been through so much and goes about it all with such a fighting attitude and the will and strength of someone far beyond her years.  I just love her so much and am so thankful God chose Cody and me to be her parents!

So...I got the appointment made for April 9th at 10:00 that morning.  My parents went with us for moral support and to help with Seiden while we were all in the room wit Dr. Thomas.  They wanted us to be able to focus on him and what all he was telling us and not have to also keep Seiden happy and occupied.  Because...let's be real.  An 18 month in a doctor's office, a specialist's and surgeon's at that, is a pretty loud and energetic experience!

When we were called back in Dr. Thomas's office, we were getting pretty nervous and anxious.  Seiden was, of course, playing with her baby dolls, coloring, telling us all kinds of stories, and completely oblivious to all that we were feeling and what was going on.  Dr. Thomas came in the room pretty soon after we were in there and was just enamored with Seiden.  He couldn't believe how big she had gotten, how much she was talking, how advanced in her development she was, and just her overall progress.  He did confirm that her cheek was pretty swollen, probably due to teething and upper respiratory stuff that was going around.  So, that was good news to hear.  He then looked at the spot we were concerned about.  What he said was music to our ears.  He was NOT the least bit worried, concerned, or even surprised about what he saw.  Because of her condition, she is likely to get hematomas from time to time in the cysts she still has within her cheek and in her neck.  What she had developed, was simply a hematoma which was caused by one of the cysts rupturing.  Not to say that couldn't be a scary situation.  But, because her cysts are concentrated and the walls of the tissues are so tight, there was no concern.  Praise the Lord for more good news.  We just continue to see God's miraculous healing in her life and just praise Him everyday for this miracle he has given us.

We sat in Dr. Thomas's office and just visited with him about Seiden, life, summer plans, etc. for a little bit.  Then, he asked us if we were ready to start a new phase in Seiden's journey.  We knew this day was coming.  I just think we were all kinda in shock it was happening so fast!  But, he told us that Cook Children's had just gotten a new Radiologist in January that specializes in cases like Seiden's.  He was previously at the Children's Hospital of Philadelphia and had great credentials, experience, and success in treating similar situations like what Seiden was born with.  Now, if that isn't God working, I don't know what is!  Because, up until that appointment, there was really no specialist at Cook Children's that could really help tackle what she has with the best results and the highest safety measures.  Dr. Adeka McIntosh was the name Dr. Thomas gave us for our new path in Seiden's journey.  Dr. Thomas's office contacted Dr. Mac's office, and together, we all began coming up with a plan to see what we needed to do to help get rid of these tiny cysts that Seiden still had concentrated in her right cheek and spread over sporadically into her left side.  Before we had even walked out of the office, Dr. Thomas had already gotten all Seiden's information over to Dr. Mac and we received a call from his office before we were even home from Ft. Worth that day.

After the appointment with Dr. Thomas, we were all in such good spirits and just so relieved and felt so fortunate to have received such good news.  Especially when we had thought we could hear something far, far worse.  It was still early, not even 11:30 and we had already gotten back to Ft. Worth.  Our appointment with Dr. Thomas was in his Hurst office because that was the office that had the first opening!  So, since we had the rest of the day, we decided to have some fun and make some memories with the extra time we were given.  Plus, we needed to celebrate!  So, once we got to Ft. Worth, we ate at our favorite spot, 'Ole South Pancake House!  That place NEVER disappoints!  Seiden was exhausted when we got there.  Actually, she fell asleep in the car before we had gotten to the restaurant.  So, I carried her in and she proceeded to sleep on me until right before the food came.  We all had an amazing lunch!  The day had turned out to be absolutely gorgeous.  So, we decided to head to the Ft. Worth Zoo for a fun little family trip before we headed home!  The zoo was amazing and Seiden LOVED it and seeing all the animals.  By about 2:00, we had seen pretty much everything and decided we should make our way back home.  But, we had to stop at Toys 'R Us as one last stop before we officially  hit the road!  Opa loves to buy Seiden treats and special things.  So, he had a hay day in there picking something out for her!  We all had so much fun in there with her.  She played with the stuffed animals, scooted around on a tricycle, read some books, played on a kitchen, and found a bouncy ball she kept kicking around while we waited for Opa to check out.  Overall, it was a GREAT day!!!  God is so good and we just continue to be amazed at the miraculous work he does in Seiden's life!!!